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Fibromya**hole: When I Encounter Ignorance

Updated on August 30, 2012

When you have fibromyalgia, or CFS or any other "controversial" and poorly understood medical condition odds are you are faced with a great deal of ignorance.

I talk a lot about how to deal with this kind of ignorance, so, when I recenlty encountered it in a most unexpected place (the lips of a former highschool teacher) I had to share our exchange.

This all started with my former teacher asking how my pregnancy was going:

Teacher: Feeling good? Strong? Flexible?

Me: Strong, yes, I've been preparing for labour like an athlete preparing for a marathon. Good, not so much. My fibromyalgia is kind of kicking my ass right now.

Teacher: Fybromya**hole. You can kick it by stretching and just moving every damn day. Don't rust.

Me: Kick it? How is one going to kick a neurological disease through stretching?

Teacher: Cope. In a healthy way. It's syndrome, not a 'thing'. Lots of modalities - manifestations in different people. It hurts, we inflame, we rust. Keep oiled and keep moving. Vit D and E.

Me: Nope, it's a neurological disease that can be viewed with CT brain scans. Believe me, I write about this disease for a living and have had it for nearly 4 years. I do everything any doctor in the world would tell you to do to "cope". As well as take my meds.

Teacher: That doesn't mean it can't be tamed with physical exertion. The mind and the body are linked. I hope it works for you. I just don't believe a pill can deal with this one.

Me: I'm going to gently inform you that you're ignorance is showing. I work out about 1-3 hours a day on the days my pain allows. Like I said, I've had it for 4 years.

Teacher: We disagree, and I'm not ignorant.

Me: You can't disagre about facts. Sounds like you're getting your information from old research.

Teacher: I can only speak from my own experience. For many, many years.

Me: Exactly, FMS work differently in different bodies. Some people are lucky enough to be able to control symptoms with lifestyle changes. These ppl are fortunate and should not consider themselves "the norm". Others, myself included, employ every available form of therapy, medical, alternative and otherwise and still struggle to manage their symptoms.It's not becuase we aren't trying hard enough, and it's ignorant to suggest that is the case.

You may also find this informative, an update on recent research into the condition at Standford University:

4 days later...

Me: Had a look at those links?

10 days later...

Me: Okay then,
1) I have dealt with forgivable ignorance often enough but never has anyone, in my entire life, been so rude as to use a term such as “fibromya**hole”. It was petty and immature and I’m surprised at you.

2) In the future you may want to consider how much you actually know before speaking. Over the last few years I have tried every form of complimentary therapy and lifestyle change available and found little relief or effective symptom management until I found a medication that worked for me. I tell you these things not because you are owed an explanation but in hopes of enlightening you to the realities of this disease.

3) Fibromyalgia is a neurological disease. It is one I write about for a living and as a part of that job I am constantly up to date on new research, you clearly or not.

4) You are ignorant, and it’s important to know what you do not know. Having only your own experience to draw on is, in this case, a perfect example of the breadth and depth of your ignorance.

5) Your ignorance, in this situation, is only matched by your arrogance; a dangerous and volatile combination. Certainly not one I would have expected from you.

6) Finally, in the future you may want to consider something called sensitivity. This disease has stolen much of my life and most of my dreams leaving pain and struggle behind. I would do anything to be rid of it. If I could I would trade both my legs to be pain-free. If it were less selfish I would die to escape it. Until you have experienced something like that, knowing that you can never escape it, I would suggest you withhold judgement and live your own life. If you have experienced something like that you seem to have forgotten the valuable lessons it can teach.

Teacher: Wow. I'm not prepared for your anger. Take good care.

Me: I wonder if you are open to learning the actual facts about FMS. And as a side note: when you choose to be that rude I think anger is an expected result.

In conclusion

There are ways I could have kept my cool a little better but even after this long this kind of thing pisses me off. For better or worse this was our conversation (edited for spelling and to remove names). I would love to hear reactions from both fibromites and, if any are reading this, people who think we're nuts.


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    • Rolly A Chabot profile image

      Rolly A Chabot 5 years ago from Alberta Canada

      Hi ar.colton... thanks for sharing this with us. I know several people who suffer with FM and it is hard for them to function. All of your articles make it easier for us who watch this happen to loved ones are greatly appreciated. Keep writing and keep being the voice of many who can not speak out.

      Hugs from Alberta

    • tsmog profile image

      Tim Mitchell 5 years ago from Escondido, CA

      Thank You for allowing my comment and responding ar.colton. A very dear friend has the diagnosis of FM, CFS & dances with depression. A read of interest for you may be her contribution with this internet article.

      I appreciate the 'pain,' yet more so the consequences of 'pain' as an essence of sorts. Learning to separate pain, an essence, from the entity of 'self' has been my personal solution. I am not pain. I experience pain. Once I learned this I discovered I could treat the symptoms in various ways.

      I am sure you take meds. I take meds = 12 little pills each day. Just standing at the kitchen counter, counting them out each morning, I go through suicidal ideations like clock work. Sometimes I laugh thinking swallow all of 'em - how easy. That is a symptom for me of the 'pain' I experience daily.

      Recently, I went through a series of days I was late to work. The comment was by co-workers knowing my recent experience and its consequences is, "Thinking about quitting again?" If only they knew what I was thinking of quitting.

      So, of essence, what I am trying to say is I understand pain. There are many forms of pain. To assert one does not know the pain of the whom of experiencing pain may very well be true. Yet, many only know the solutions of treating the symptoms of pain with their own life experiences. Personally, over the past 25+ years I have learned to smile, even though it hurts.

      And, ar.colton I happen to like your smile. I will be reading your contributions with a very, very specific niche - FM & CFS. However, I have a mission regarding it and a friend. FM has not only touched my life it bulldozed it over. Yet, I have a life to live, my pain, and the desire you have as well and share selflessly - knowledge and information, empathy instead of sympathy, (which if empathic such as I am can be very painful), a bent ear from time to time, although mostly my ministry is offering a real, crow eyed, reddish tinged cheek, smile

      My friends know me as Mitch

    • ar.colton profile image

      Mikal Smith 5 years ago from Vancouver, B.C.

      I'm not suggesting that anyone is ignorant of pain. I am suggesting that if one knows little about fibromyalgia they should not lecture others on how to deal with the disease. Fibromyalgia and pain are not synonymous. There is so much more to living with this disease than that.

      For example: there are a lot of painful disease in the world: Chronic Fatigue Syndrome, Many forms of cancer, arthritis etc. My experience with FMS and the pain that it entails is in no way a reason to lecture someone with stomach cancer about how to deal with it. It's completely different, however much they both hurt.

    • tsmog profile image

      Tim Mitchell 5 years ago from Escondido, CA

      I'll comment. First, let me make it perfectly clear. I mean downright to the point and leaving out nothing. I am ignorant of FM other than a friend, the experience of the confusion of that relationship while not knowing, and a few days at Daily Strength seeking learning. However, I understand 'PAIN' as well as most if not more than. I do not argue that person's with FM have pain, yet they do not have exclusive rights to Pain.